Eleven years ago I went to the Mayo Clinic. I saw a neurologist who believed absolutely nothing was wrong with me but to appease me did a muscle biopsy on my left leg. I was not given any information on this procedure. I knew it was to be done while awake. I did not know of the rest or I would not have had it done. I was strapped down to a table with big straps velcroed down. I also had two nurses holding each shoulder down. My leg was not draped. I received a few shots under the skin but was told the numbing could not reach the muscle or it would compromise the tissue. I lifted my head and watched as my skin was cut through. I looked at the white facia underneath. I watched as they used a device that held open my leg. I could see inside my leg. The pain was excruciating. I tried not to move but it was difficult. He warned me that the muscle would be taken with no anesthesia. I had no idea what pain was until that muscle piece was taken. Then another piece was taken. After, he stuck a needle in the muscle which was also excruciating and he numbed it. He numbed the rest of my leg and I watched as they cauterized. I smelled it. I still remember the smell. When they took the muscle sample I screamed louder than I had ever screamed. He commented that it was a good thing we were in a sound proof room. There were no words of comfort or compassion or validation that what they were doing was completely barbaric and I was giving no prep, no warning, no way to make a clear decision on this procedure. My left leg, which was my strong leg, atrophied. It never fully healed.
Three weeks later the neurologist called me and without even introducing herself, saying hello, asking if it was me she was even speaking to, she just announced to her SURPRISE there WAS actually something wrong with me. I had a muscle disease with no treatment and no cure. That was it. She was a bitch. She was the biggest bitch doctor I had ever come across. In her delivery of the news of my muscle disease she had to make sure she emphasized her original disbelief that I had a condition by even more so emphasizing her shock that I did.
It’s hard to believe I chose to ever go back to this place but after I discovered I needed an iron infusion, I knew it was the only facility giving this cutting edge iron. It was only 15 minutes to infuse unlike that 6 hour infusion offered elsewhere. Insurance also covered most of it. The Doctor was very nice, very informative, and upon receiving my blood results that day, sent me immediately for an infusion. He even made space and time where there was none to save me the 4 hour round trip to come back. Unfortunately, I developed bone pain after the infusion. I had to go back again to get evaluated for this bone pain by him. I saw his PA. I wonder if I will see him again. She referred me to an endocrinologist. I needed to make one more trip to find out why my bones were hurting.
I went back for another trip to Mayo clinic. It was a very long and exhausting day for me. Some of my test results were back but not all. My bone density scan results showed what I already knew. She explained that even though osteoporosis was what the scan indicated, the positive was it was not as if I were an 80 year old with these bones. I was a 44 year old with these bones, that weren’t good, but not the risk fracture other doctors had told me. She also told me that she would never give me fosomax, something other doctors had been pushing on me for 11 years . But she had a plan. She was going to message me with my X-ray results, and my further labs she had ordered. She planned on giving me a level of Vitamin D I could take that would regulate permanently my PTH(parathyroid hormone ) that was still elevated. She was also going to refer me to a spine specialist but in the mean time order a radioactive dye test for more of my bones.
I waited. A week passed. She said I would hear from her that next Monday. Another week passed so I sent an email. Nothing. A few days later I called. I was informed that yes, she did receive my message but had no message for me. I wait another week. Almost a month has gone by and NOTHING.
I am thrilled that the Mayo clinic hacked out my muscle by a Doctor who didn’t give a shit in the first place, but did give me a partial diagnosis. I am thrilled that the Mayo clinic gave me an iron infusion. But…I wish I could put into words how I felt. I guess the continuing theme in my life…I don’t matter. We’ve paid them enough thousands of dollars to matter. They always initially make me think like I will matter. But then I don’t.
I wanted to give up going to doctors after the muscle biopsy. It is a hard hard balance of what to pursue and what not. I pursued the Lyme disease diagnosis here in my town, only to be treated for 2 years and still not be well, but that is no fault of my doctor.Lyme disease, too, is just a bitch. At what point do you just say enough is enough. This endocrinologist could not explain my bone pain except to say perhaps it is lingering from the iron infusion. The hematologist could have told me that and saved me a trip. But I wanted answers to my bones, a fix for my bones. I have seen tons of endocrinologists in the last 11 years and none has given me an answer to why my vitamin d drops and why my pth raises damaging my bones. At least the bitch neurologist doctor gave me an answer of central core disease.
I’m torn between bitch doctors with answers and doctors who completely blow me off. I dont know which is worse. I’d rather have neither.
The defense I hear for doctors is bogus. “They are people too and their days are hard.” They chose this job. They chose to help sick people. They deserve no kiss ass because they are doing what they are being paid a shit load of money to do. I don’t feel sorry for them because they are doing their job. That would be like saying you feel sorry that a psychiatrist had to listen to woe is me stories all day. She does. She gets paid to do that. I treat these doctors with kindness and patience. This has gotten me nowhere. Half of them have to google things that I have known for the last 11 years and yet I must say “doctor” because they have “earned” this title. Not always. The ego is unbeleivable and for what? If you save my life, treat me, help me, you get to have a little ego. I’ve seen no one as of yet that deserves the respect of their title. They pass me off, don’t follow up. And here I sit.
So I think, unless I am in critical shape, I will forgo anymore Mayo clinic trips. I’m finished being a “mystery” to them, done being tested on to not even have follow through or respect. My bones are shit, my muscle are shit, searching for the why and expecting to find something new….I’m over it.
A REAL Doctor in England has been researching my case for 11 years now. HE gets to be called Doctor. And do you know what he has me call him? By his first name. Because that my friends is a man doing his job for the right reasons. Wish I could say the same for the rest of them.